Stories

Picturing the Future of Epilepsy Care

Picturing the Future of Epilepsy Care

Daniel Kelley's recent epilepsy surgery left the 3-year-old (pictured with younger brother, Jack) free from seizures and with his motor skills intact.

Epilepsy is as puzzling as it is frightening. In seven out of 10 cases, the cause of the condition’s sudden and dangerous seizures remains unknown.

The encouraging news is that doctors are constantly improving epilepsy treatment while collecting new clues about the causes for the disease. Nationally respected neurologist Dr. Rusty Novotny, medical director of our epilepsy program, is helping Seattle Children’s become a leader in better understanding this mysterious brain disorder.

Dr. Rusty Novotny is a leader in developing new ways to combine images from different imaging systems – like PET scans, MRIs and CT scans – to create a clearer picture of what is happening in a person's brain.

Novotny joined Children’s from Yale University, where he led the Yale–New Haven Hospital pediatric epilepsy program and developed ways to combine images from different imaging systems to create a more accurate picture of a patient’s brain. This work opens the door to improving the diagnosis of different forms of epilepsy and better gauging how therapies are working. It also helps surgeons better map critical areas of the brain before operating.

“We had some of the most advanced imaging systems available, but we weren’t maximizing them,” notes Dr. Jeff Ojemann, neurosurgeon and director of surgery for the epilepsy program. “Rusty is helping us marry those technologies and gather critical information that wouldn’t otherwise be apparent.”

Hearing the whispers

Normal brain function is made possible by millions of tiny electrical charges passing between nerve cells in the brain and to all parts of the body. When a person has epilepsy, sudden and intense bursts of electrical energy interrupt this process.

The bursts cause seizures that range from momentary lapses of attention to prolonged convulsions. Whether they occur every few months or dozens of times a day, the seizures can interfere with a child’s learning and development and even cause permanent brain damage.

To identify forms of epilepsy and decide how to treat it, doctors use a variety of imaging systems to study the brain structure of and metabolic activity in affected patients. Each imaging system relies on different data sources – gamma rays from positron emission tomography (PET) scans, radio waves from magnetic resonance imaging (MRI) scans or X-rays from computed tomography (CT) scans – to produce separate snapshots.

Integrated imaging combines this disparate data – plus results from other sources such as electroencephalogram (EEG) tests – to produce a single digital picture and then processes it to identify features that separate images don’t show on their own.

Better pictures help identify various forms of epilepsy, better gauge how therapies are working and better map critical areas of the brain before operating.

Ojemann compares the difference between integrated imaging and conventional imaging to listening to five different people whisper. “You might not be able to hear them if they whisper alone, but if they all whisper at the same time, you can.”

In other words, the whole (an integrated image) is more revealing than the sum of the parts (different images viewed individually).

“We have our boy back”

Tristan Carroll, 8, was having up to 50 seizures a day until Dr. Russell Saneto prescribed the exacting high-fat, low-carb ketogenic diet.

Strokes, brain tumors and trauma cause most epilepsy in adults, but the underlying cause of most epilepsy in children is genetic. Although there’s no cure for most forms of the disease, medication helps two out of three children control their seizures. Our epilepsy program offers the latest drugs – and several alternatives if medications don’t work.

Options include surgically removing or disconnecting misfiring tissue, implanting an electronic device known as a vagus nerve stimulator, and putting children on a special high-fat, low-carb diet. Known as a ketogenic diet, this therapy is helping Tristan Carroll stay seizure-free.

Tristan, the 8-year-old son of Jim and Christine Carroll of Duvall, was diagnosed with epilepsy when he was 2. Over the years, he tried many medications, but none provided permanent relief.

A year ago the seizures began coming faster and faster until Tristan dropped to the floor with convulsions 50 times in one day. After a trip to Children’s emergency department, his neurologist, Dr. Russell Saneto, decided he might be helped by a ketogenic diet in combination with medication.

Tristan has had only two days with seizure activity since starting the diet a year ago. He played baseball this summer and attended his first sleepover. “The seizures were preventing him from doing so many things,” says his mom. “He’s a lot more independent now. We’re so grateful to Dr. Saneto and Children’s Hospital. We have our boy back.”

Ketogenic diets and medications don’t cure epilepsy, so doctors track patients like Tristan closely as they grow up. Novotny envisions an expanding role for integrated imaging in following a child’s progress and watching for possible side effects from treatment. Doctors could, for instance, use different MRI technologies to look at brain function and brain chemistry concurrently to see how the chemical changes that occur with treatment relate to memory, speech and other neurological development.

“We’re not doing that yet, but it’s an example of how integrated imaging can help us monitor and adjust treatment to optimize outcomes,” Novotny says.

“In good hands”

Neurosurgeon Dr. Jeff Ojemann.

Daniel Kelley, the son of Jeff and Brenda Kelley of Bonney Lake, was 6 months old when he was diagnosed with epilepsy. Medication controlled his seizures for a while, but they soon returned – a pattern that was repeated with every new medication.

Daniel was lucky in one respect. An MRI indicated the seizures were originating from a specific location – a lesion on the right side of his brain. That meant Ojemann could perform surgery if he could determine the precise boundary between the lesion and surrounding tissue that controls the movement of Daniel’s hands.

To find a separation between the lesion and the sensitive tissue, Ojemann blended data from an EEG with integrated imaging from a PET scan and a special type of MRI. Known as an fMRI, or functional MRI, it is taken while patients perform tasks such as reading or tapping their fingers. The results reveal areas of the brain that must be avoided during surgery.

Daniel’s surgery left the 3-year-old free from seizures and his motor skills intact. “We were nervous,” says Daniel’s mom, “but we knew we were in good hands because Dr. Ojemann was so careful and specific about how he prepared for and performed the surgery.”

Gift aids recruitment

The Alvord, Gerlich and Rhodes Family Endowed Chair in Pediatric Epilepsy helped bring Novotny to Children’s. The endowed chair was established with a gift from the family of the late Dr. Buster Alvord (see below).

“We were already known as an excellent regional referral center for epilepsy,” says Dr. Sidney Gospe, who leads Children’s Neurology Department. “We recruited Rusty to help us become a national referral center that improves treatment and contributes new knowledge about this disease. We couldn’t have attracted someone of his stature without the resources this gift provides and the statement it makes about our commitment to fighting epilepsy.”

Novotny says Children’s is a great fit, providing state-of-the-art imaging systems, a deep pool of information technology talent and a host of skilled medical specialists – both at the hospital and the University of Washington. Another attraction: working in a hospital devoted solely to caring for children in a region with a growing population.

“There is so much promise here to build an epilepsy program that breaks new ground and translates what we learn into better patient care,” Novotny says.

Exciting progress

Under Novotny, our epilepsy program established a fellowship program to train doctors in this important specialty and began using telemedicine to digitally collaborate with community physicians in distant locations.

We also joined a nationwide study – the Epilepsy Phenome/Genome Project – which seeks to better understand which genes influence epilepsy and how. The goals of the study include finding which medications work best with which forms of epilepsy, and identifying certain forms of epilepsy that disappear as children grow older – knowledge that would help avoid needless surgery and limit duration of medical treatment.

“That’s what makes epilepsy such an exciting field to be in,” Novotny says. “What we learn through research can be directly transferred into improved patient care.”

Gift Continues the Work of a Pioneer

Nancy Alvord and her late husband, Buster.

The late Ellsworth C. “Buster” Alvord Jr. was known throughout the world for his pioneering contributions to the field of neuropathology. Alvord served as head of neuropathology at the University of Washington School of Medicine for 40 years and provided clinical care at the UW and at Seattle Children’s. Two of his books on brain development and neuropathology are still considered classics, and his research helped improve the care of people living with multiple sclerosis.

“Research, teaching and patient care were equally important to him,” recalls Dr. Bob Hevner, a researcher at Seattle Children’s Research Institute and one of Alvord’s illustrious protégés. “He enjoyed his work more than anyone I know and his enthusiasm and positive attitude spilled over to everyone he worked with.”

Over the years, the Alvord family has maintained close ties to Children’s, raising money, volunteering and hosting luncheons and meetings. They also created the Alvord, Gerlichand Rhodes Family Endowed Chair in Pediatric Epilepsy.

“Our family knows how much work there is to do to advance care for kids with epilepsy,” notes his wife, Nancy Alvord. “We are proud to help bring talented, visionary leaders to Children’s. Our endowment is a way of carrying forward the work that Buster started.”

Seattle Children’s provides healthcare without regard to race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry) or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.